Posts: 15

Topic: I think it is time I introduce myself.

I have been hanging around the site now for almost 5 months, so I thought I should go ahead and introduce myself. I kinda feel like I am at an AA meeting (although I have never been to one.) My name is Colleen and my husband Fred (37) has CC. He was diagnosed with on March 26, 6 months ago today. We live in Chesapeake, VA and have two girl

Re: I think it is time I introduce myself.

Colleen,

I'm so glad you introduced yourself. I think there are many just like you who hesitate to share in such a public forum.

Frankly, I don't think any of us would choose to hang out at a cancer site, but here we are, something terrible has brought us together but together we can help each other and we can make this site a source of information and hope for others.

We look forward to your blog. I know it was so helpful for our family and especially for so many friends and neighbors, who wanted to help. So many want to call and ask how things are going, but are nervous to do so. Nor do you want to spend your day going over and over the same things. It really makes communication so easy and it helps everyone on the website as well.

Cholangiocarcinoma is a burden for all of us, but burdens are lighter when they are shared and there are strong shoulders here.

Re: I think it is time I introduce myself.

Hello Colleen,

So glad that you finally shared you story with all of us. My thoughts and prayers are with you and Fred. It sounds as though you are having some great results fighting this disease. Keep fighting and keep strong. Fred has so much to live for and those little girls of yours need their Daddy.

I ditto what Stacie and Marions had to say, it just about sums everything up, and I could never have said it any better. We are all pulling for you and Fred.

Re: I think it is time I introduce myself.

Hi Colleen,Nice to meet you! Your husband's story seems like a very positive one in terms of response to treatment, and refreshing for all of us here, I'm sure. His youth makes his chances of beating this disease so much better, and I'm pulling for you and your family.

I just wanted to comment on one thing you mentioned: Crohns Disease. I was doing an Internet search the other day on the gene that may cause cholangio, and I came across a certain gene, and it was also implicated in the development of Crohns Disease, diabetes and rheumatoid arthritis, if I remember correctly. I'll try to look at my recent Internet activity and find out what it was I was reading, if you'd be interested. Not that it can really help, but it's amazing how much the docs don't know and it may help to know there IS a connection so it can help future sufferers.

Re: I think it is time I introduce myself.

Colleen,One word on the statistics, they have been composed over several years and do not reflect the advances made in treating this disease.

My bestfriend is a pediatric oncologist and I whined about the statistics to her and bless her she basically told me to shut up, that if I could find statistics for a 32 year old diagnosed at my stage and with a liver resection based on research conducted in the last 3 years then we could talk. If not, I was supposed to ignore the statistics because they did not pertain to me and were irrelevant. You got to love it when your friend tells you to shut up and is right!

Re: I think it is time I introduce myself.

Re: I think it is time I introduce myself.

Thanks for introducing yourself Colleen. I echo everything that everyone else has said, and I wish you and your husband and your kids love luck and strength. THis site is a great place to share. All the medical sites, whilst full of information, lack the human "touch". I know when I was in the researchresearchresearch stage, finding this site helped me more than any "facts" or statistics ever did!Sadly I lost my Mum to CC earlier this year. Coming to this site STILL helps!Much love xx

Re: I think it is time I introduce myself.

Hi Colleen and Fred, This disease just won't leave people alone. I'm sorry that you have to go through what so many are,including myself. It's a tuff pill to swallow and a hard battle to fight. However, there is hope!!!! I'm telling you right now that it may not be pleasant at times and Fred you'll want to throw in the towel--- but that's when you want to kick in the overdrive! I have been dealing with this disease for over 8 and 1/2 years. Unfortunately many lost the battle but on the same note I've seen others go on for years. Stay positive, always look for something new, advocate for yourself when needed. Even change direction if your body tells you to. Yes you heard me right. Get to know your body and symtoms and listen to what it is telling you. Relax, meditate, Visualize those cancerous cells leaving your body like they were on fire. Be prepared for all the side effects and have appropriate meds on hand to combat the side effects. Don't wait; if you feel something is different and not right get it checked out. I'm saying this because I've been doing it and will continue to do so until I stop this critter or a cure is found. Sounds Like I have an attitude hey? I get carried away at times. Especially when little children are involved. Bottom line Fred, is you got to keep that positive switch turned on and pray for a cure around the corner or a treatment that works for you. Got to get the grandchildren ready for bed. They are awaiting for their bedtime snack and milk. I sincerely hope your treatment keeps on working and if they stop try something else. Sometimes you have to play hide and sneek----up on them with something new.God Bless You All,

Re: I think it is time I introduce myself.

Colleen,

I understand your burden. My husband has left the research up to me. So much of what I read is too scary to share with him. I have tried to put myself in his shoes. How would it feel to have to say, "I have cancer"? It is hard enough to utter the words "my husband has cancer." I, too, admire my husband's strength and his resolve to fight this disease.

It is my job to help him do that. And yours, too, is to help Fred fight. We do that in the best way we know how, muddling through the dark hours and following the path we know to be right. Keep it up girl.

Re: I think it is time I introduce myself.

Reading all your posts makes me so glad to be a member of this supportive family at CCO. Nice to "meet" you Colleen. My Dave was also diagnosed in late March. He had chemotherapy only for 4 months but then almost died of a cardiac problem ( in fact I breathed life back into him) and he opted to stop the chemo and try some alternative treatments including IV vitamin C. He is feeling much better and has gained some weight and his many liver tumors had gotten smaller on the last CT scan. He is do for another scan in a couple weeks. Best of luck to you and your husband. It sounds like progress so far and as others have said attitude really counts. My Dave doesn't read anything about CC either, so I guess we really have a spouses club going here! You both will be added to our lists of people in our daily thoughts. Patrice

Re: I think it is time I introduce myself.

Re: I think it is time I introduce myself.

jmoneypenny wrote:

I just wanted to comment on one thing you mentioned: Crohns Disease. I was doing an Internet search the other day on the gene that may cause cholangio, and I came across a certain gene, and it was also implicated in the development of Crohns Disease, diabetes and rheumatoid arthritis, if I remember correctly. I'll try to look at my recent Internet activity and find out what it was I was reading, if you'd be interested. Not that it can really help, but it's amazing how much the docs don't know and it may help to know there IS a connection so it can help future sufferers.

Hi Joyce - We have talked to his doctors about there being some connection between him having Crohns and CC, but they seem to think that they aren't related. I recently read a study done at the Mayo clinic that linked the two, and we questioned his gastro doc about it and he still said he didn't feel they were related. I guess we will never be able to answer why he got CC. The crazy thing about all of this is his Crohns is pretty sever so he is monitored very closely and has been having liver function and other liver test done every three to six months for the past 11 years do to the side effects the meds he is on for the Crohns can cause. Everything has always came back normal then he just woke up yellow one morning and has this horrible cancer. If you find the info you were talking about, I would like to see it so I could send it to his docs. - Thanks Colleen

Re: I think it is time I introduce myself.

Hi Colleen,I think I was mixing up Graves Disease and Crohns but I did find something about a possible connection. The gene marker for some autoimmune diseases that may lead to cc is HLA-DR3 and/or HLA-DR4. Here are a couple of pages that may link those genes to Crohn's. Sorry I can't be more specific as I don't remember the train of thought I was following as I was searching the Internet - my mother had autoimmune hepatitis so I may have been looking for that.http://www.ncbi.nlm.nih.gov/sites/entre … d_RVDocSum

Re: I think it is time I introduce myself.

Hi Colleen,I join the group of caregivers who husbands don't read the website. Joe has the info he needs but not all the stats etc. that don't have to do with each individual case. we will add you to our prayer list.I haven't been on the site for over a month so have a lot of catching up to do. I miss kkeping up on treatments etc.We wondered wht Joe was supposed to do with the time God has given him. Now we hae a younger family member, 44, who was just diagnosed with stage 4 Carcinoid (which is different. It has really helped with him being able to share with her the feeling about the shock etc that happens when it comes out of the blue. So God has a plan, we just don't know what it is but we re open to Him every day to do His will. God Bless Mary Anne

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